What Word Best Describes Living With Thyroid Disease?

Sebastian has a question for you…

Hello everyone out there in the Nation of Thyroid. Recently, I was asked a question that I thought was so interesting and deep, and I wanted to share it with all of you. It wasn’t about which diet or medication is better for you, or which tests you should ask for or anything related to the science behind the Thyroid. I’m very upfront about the fact that there is no M.D. in my name, so I most certainly am not the be-all and end-all of everything Thyroid. I’m not going to pretend that I’m an expert and tell people what they should or shouldn’t do. Everyone is different, and handles their journey in their own way, so who am I to judge what anyone else does? But I digress.

The Challenge Of Living With An Invisible Illness

The question, simply put, was to describe in one word what it’s like to live with a Thyroid condition. Naturally, my initial response was “frustrating.” I mean, let’s face it… between losing our hair and gaining weight and mood swings, it is. And having to defend how you feel to people who want to say you are just lazy or overweight or getting old or bipolar, or my personal favorite, antisocial, can make you want to tear whatever hair you have out. They just don’t get it, and no matter how many times you explain it, the fact that this is a disease that you can’t physically see, makes it impossible for them to understand. But here you are, living it everyday. And being a male living with a Thyroid condition adds to the frustration, because as we all know, Thyroid problems are a female thing, right? All the research and discussions focus on women, and barely cover men. So how could a guy like me really have a Thyroid condition? Yet here I am, walking the walk and talking the talk. Isn’t that proof enough? How many times can we hear that Thyroid problems are nothing or just an easy fix? I personally love being told that all I really need is to eat right, get rest, meditate and be stress free. I always want to respond with I think that was Hulk Hogan’s sermon back in the 80s at wrestling events. I mean isn’t that what WE ALL should be doing, regardless of a Thyroid condition? And if it really was as simple as that, please explain to me the need for Thyroid medication. It’s a fact that Synthroid is the number one prescribed medication in America, so if it was as simple as diet and exercise, why the high prescription rate?

TSH is NOT The Only Important Test To Run

And let’s not even delve into experiences with doctors and specialists. How many have each of you seen along your chosen journey? I am going onto my fifth in fifteen months. I have been poked, prodded, weighed, been given the run around and have had enough blood drawn to replenish several accident patients, just to be told that my TSH is (fill in the blank). Let me get this straight: you went to medical school and make six figure salaries, and I have to do my own research, and beg you to do tests beyond TSH? And I have to trick you into giving me T3 because the manufacturers of Synthroid call the shots in the Thyroid world? Where’s the justice in that? People are really sick here, and the doctors actually know that T3 along with T4 is the key, so why are we given a hard time? Why do insurance companies deem medications as being “medically unnecessary?” Aren’t the test numbers proof enough of necessity? My breaking point was being told by my last Endocrinologist that I no longer need to have my Antibodies tested because we already know I have Hashimoto’s Thyroiditis, so what’s the point? Tests other than TSH are a waste of her time and money? SHE’S NOT PAYING FOR IT, I AM!!!!

More Than Frustrating

That’s the basic everyday life of a Thyroid patient. Wouldn’t you agree? And doesn’t “frustrating” pretty much cover it? But after thinking about it more, I had to take it a step further, because it is MORE than frustrating. After much thinking, there was another word I would use to better describe living with a Thyroid condition: “game-changer” (it’s a hyphenate, so it counts). Let me explain where I’m coming from. Yes, it is frustrating to deal with the outside world, but isn’t that the case with just about any chronic Autoimmune disease, or to be more general, anything that society doesn’t understand? For example, the entire storyline of the last season of “Real Housewives of Beverly Hills” was whether or not one of the women had Lyme Disease or Munchausen Syndrome. She was in bed for eleven months, had a walk-in closet filled from top to bottom with medications, and still had to prove she was really sick, because she looked fine, and all the photos she posted from doctor appointments and treatments weren’t proof enough. This is the society we live in, where it’s easier to believe someone is faking an illness rather than to have compassion. Leaving the outside world out of the equation, let’s talk about what this illness does to each of us personally. I don’t know about you, but one of the biggest things I have noticed since being diagnosed is how many times I second guess myself. Is my hair falling out because of my Ferritin levels, or is it because I’m getting older? Am I in a bad mood because of something real, or is my Thyroid leading me to overreact? Am I really beginning to forget things, or is it brain fog? Should I go to a function knowing that I will pay for it by being in bed for two days afterwards, or am I psyching myself out of it and blaming my Thyroid before even attending? See where I am going with this? Had I not known about my Thyroid and read up on the three hundred plus symptoms associated with it, I wouldn’t have those seeds planted in my head, would I? It’s a definite mind-tease, if you will, and that in itself is a symptom of poor Thyroid function. But I guess the counter to that is if I didn’t know what was going on, I’d still be stuck being accused of pretending to be tired just to get out of seeing people. And the reality is that in the fifteen months since starting my personal journey, and even prior, I have never backed out of a function because of my Thyroid or a flare up. I went and paid the price the next day. Oh, there I go, bringing the outside world back into it… Moving on. I guess the biggest part to dealing with a Thyroid condition and all its symptoms for me, has been having to face many insecurities or fears. Think about it. How many of us have insecurities about our bodies and gaining weight? Or have a fear of losing our hair? Or about having a low libido and possibly losing a partner? Or having a severe case of brain fog and feeling like we can’t function at work and could possibly lose our job? Or possibly that our mood swings are a precursor to being bipolar? My greatest fear in life is to one day lose my mind and not be able to do things I have once loved, like writing, and eventually not be able to function on my own. Knowing that the Thyroid over time does effect the brain and can lead to things like Alzheimer’s or Parkinson’s feeds into that fear of mine. But it hasn’t stopped me from going out into the world and living my life, because the alternative would be allowing my fears to take over, curl up in the fetal position and never leave my home. What kind of life would that be?

Fears And Insecurities

These are genuine fears and concerns that every single person on the planet deals with, but that we living with a Thyroid condition face head-on constantly. We have no choice, because even sick, we have to function every day. It takes a very strong person to face their fears on a daily basis and head out into the world, yet we do it. We may not succeed at everything every single time, but we make the effort, and work with what we are given. And even with facing our own fears and insecurities, we still have to take on the outside world that questions our health. And still have to deal with our doctors and specialists who have their own agendas, which have little to do with helping us. I think that makes us stronger people than we even realize.

So for me, being diagnosed with Hypothyroidism and Hashimoto’s Thyroiditis is absolutely frustrating. I won’t deny that. I have completely terrible periods of brain fog and flare ups. But it also completely changed my life. It helped me start facing lots of my own fears and insecurities within myself, and put my own ego and vanity aside, while taking on the ignorance of people in my life and in the world. And in the end, it made me a stronger person, both inside and out. For me, it was a game-changer.

Whats YOUR Answer???

But that’s just me, and that is my one word (again, it’s a hyphenate) to describe living with a Thyroid condition. Like I said, when I was asked this question, I thought it was so interesting and deep. I also thought it could be such a conversation starter. So, with that said, I want to start the conversation, and challenge all of you living with a Thyroid condition, regardless of what it is, to tell me your one word to describe your life through your own Thyroid journeys. I think if you search within yourself and really think about it, you’d be surprised at your own answers.

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About the Author

Sebastion Kern was diagnosed with Hashimoto Thyroiditis and Hypothyroidism in March 2015, at the age of 41. He is a blogger and creator of Baztards.com, a website geared towards empowering people and looking for the positive in any situation. Sebastian lives on Staten Island with his boyfriend, Joseph, and his Chiweenie, Jack. Check out his Thyroid Thrivers story, here.